Life is like high school. Hopefully with less clouds of Impulse deodorant in the phys ed change room, fewer meanies pointing out every flaw and not as much homework. Even as adults we fluff around trying to learn what we need to know and figuring out how we fit. Isn’t it mainly that? How we fit. What is my life purpose? Am I on track? Who gets me? As a parent of a kid with a heap of extra stuff going on all of this is amplified. The uncertainties are huge and the path I thought I was travelling has been wiggled and jiggled until it flipped me off. One thing that helped? Finding my people.
Family has always been so very important to me. What I have found since joining the CP parent club is that you can build a knowing family on top of your genetic one. It has taken quite a while, but I am lucky to have found people to share our quite unusual “normal”. Through early intervention, school, Very Special Kids and the occasional carer function I have built a tribe of fellow parent/carers to bounce through life with. At 3am when my brain is in overdrive there is also an online community willing to listen, share and empathise.
I value my family and my “regular” friends. There is just something about those who walk a similar path that makes me feel less alone. It works both ways. I have knowledge and experience that can be of value to others. A great way to feel purposeful and use my unique set of skills (one-handed-medication-syringing-while-catching-vomit…anyone else?) is to help someone else. And so I do, when I can. One of my most favourite times every couple of months is having coffee and a muffin with a great bunch of Very Special Kids parents. We share …laugh…cry (sometimes at the same time). It takes time and juggling to leave the house though so online forums are a treasure to behold. I have blubbered my way through many a challenge to soothing typed words from a friend in cyber-land.
These days a quick search can point you in the direction of others like you. Yes they do exist! While we may bemoan technology as the curse on the eyes-down teenager, having access to fellow parents worldwide facing the same challenges of even the more rare syndromes is nothing short of extraordinary. Where would we all be with out that sage piece of advice from another carer? We all live it, so we know it. Sharing makes the path easier for us all. So find your tribe and love them fiercely.
I just read an article. Apparently the Pope welcomed a child with a disability on stage while addressing an audience. It made me think. And remember. Recently I spoke with the lady behind me in the supermarket queue. Her rogue trolley was trying to escape the confines of aisles and pre-Christmas busyness. So she stopped it with her foot. In asking after her toes, I happened to remark that my toes often got a bashing in this sloping-toward-the-door-supermarket when my daughter was using her manual wheelchair. She said “Sorry”. She wasn’t apologising for my bruised foot.
What is this idea that many people assume those who have something such as cerebral palsy want or need to be fixed? This lady was well meaning. No ill will was intended and I was having a decent day so didn’t take offense. I replied with a hearty “No need to be sorry, she’s just fine thanks.” The encounter did stick in my head for a while though. It had been a long time since someone felt and expressed the sorrys” in public. Don’t misunderstand me. I would take away the pain and make my kids life easier if I possibly could. As all parents would. But my kid is who she is and proud to be exactly herself. More so than even I give her credit for. Recently she had to answer questions about herself for school. It was suggested that I could fill much of it in for her as I know what she’d want to say. But there was no way I would have predicted her first answer. Under “The three most important things to me” she said “I have cerebral palsy (and) I think different(ly)“. I mean….wow. Such insight and knowledge of self for a 15 year old. She is proud of herself not despite her CP but because of it!
Meanwhile, across the world, the Pope has been applauded for allowing a child to approach him and play on the stage nearby. While trying to grab him, his mother apparently explained that he is non-verbal. The Pope then included this interaction in his teachings for the day saying the child had preached to them that they be free like a child. All gracious and seemingly lovely stuff. Until I read on. Apparently his grace then prayed that the child may speak. Now I know this is still coming from a place of kindness and some reports suggested the mum asked for this. But. Did this kid not deliver his lesson because he didn’t speak? It’s a fine line isn’t it. We all want our kids to be happy and have a smooth, easy path. Unfortunately perception in the community seems to be that this means that disabilities need to be fixed. That my kid needs to be something other than exactly who she is.
I realise that I have simplified the issue and in no way wish to dismiss the difficulties associated with having to access the world differently. It can be so very challenging. I get that. I live it, alongside my gorgeous girl. But that doesn’t mean she isn’t enough. In no way would I change her for society or for me. If there was a magic wand I would give it to her to wave as she wishes. And this feisty, happy kid wishes to be herself. That’s the magic.
Today is International Day of People with Disability. The theme this year is “empowering persons with disabilities and ensuring inclusiveness and equality”. That’s quite a mouthful but says it all. As a parent of a child living with a disability, I’m mindful of how I speak of my observations. While my daughter’s disability has a big influence on what I do everyday and how I see the world, it is not my life…her life is hers. So empowerment for her is crucial. Difficult, but crucial. From my point of view, my kid doesn’t need “special” treatment, she simply needs whatever support is required to have the SAME opportunities as her peers. Over the weekend she had a crack at equality that made her mere mother nervous.
She went camping. In the bush. With only pit toilets and scratchy phone reception. Her step dadda (Adda) is a sensible man (I may regret putting that in writing!) so they were less than an hour from home, he had back up systems in place for the back up systems and he organised a carer to go before informing me of their plans. She was so excited the night before she struggled to get to sleep. I survived and so did they. Not only that she had heaps of fun…especially on the first day. There was a storm overnight which was apparently very loud and super wet. But they kept her dry and all got home safely. Isn’t that what it’s all about though? The same opportunities as her peers. Fun times doing what she loves and navigating the challenges that go alongside. Super Adda delivered a perfect example of inclusion and empowerment for the little adventure junkie.
Helping others truly understand inclusion is an ongoing challenge. We have come a long way but the work continues. There is certainly a more inclusive attitude out there in the community. Many more places are truly accessible and Changing Places facilities are multiplying the spots we can happily visit knowing we can all dash to the loo when nature calls. Inclusive and accessible education is also greatly important. For how can someone feel empowered without the experience of learning to make their own choices and having people around them setting high expectations? For our kid this has always meant a combination of school settings, which works better some days then others. I do often feel our girl needs a sign which reads “Watching is not Doing” that she can pop up from her wheelchair as required. She is far more gracious than I but I do see her frustration. I feel when sitting on the sidelines happens, it is not necessarily through lack of care or trying but a lack of understanding. Or maybe a misplaced thought of protection. As much as it makes me anxious (it’s my job as a mamma) she doesn’t need protection. She needs to get in there and have a go in whatever way she can. Luckily for her she has many people in her life who ask “how can she do this?” rather than shying away.
Recently Missy had a medical procedure which would normally require happy gas. Due to a mild illness her breathing would have been compromised using the gas so the staff suggested going ahead without it. As her mum I was firmly leaning to “no-way-are-you-crazy-people-that-needle-is-huge”. But we asked her. She said ok. Watching this kid with a severe movement disorder keeping her body and mind calm and still absolutely blew me away. The doctor acknowledged just how much mental toughness it must have taken. Her body, her choice. Empowerment at it’s best. As a mum I find it really difficult to step back. But the kid is heading toward 16. It is age appropriate for her to be making the medical calls ( with discussion and minimal guidance) and she has been for a few years now.
Today reminds me to keep being brave (as she is) and help her embrace every possibility. It is a reminder to continue to teach others that people with disabilities are people who strive for the same joy in life given the same opportunities. I will, as always, follow her lead.
Recently I revisited Welcome to Holland. This piece was written by a parent in answer to the many questions of what life is like when your child is born with some extra stuff going on. In the early days it was instrumental in helping me find my feet. In a piece written by Kate Menzies , Kate made an analogy of her life with a disability with a visit to Disneyland instead of the much longed for and flashier Disney World. Both pieces had me pause in wonder at where we are in our travels through both Holland and Disneyland.
Communicating the ups and downs of our life with CP feels like a balance between truth, pity and blame. I have no intention to engender pity here nor to sound like I blame my kid for the challenges we face but the truth can be confronting. Acceptance was difficult to find but once sitting in it’s comfy chair, life has been easier. That does not mean that there are no challenges. Nor does it stop grief biting me in the bum on occasion. It does give assurance that the challenges can be worked through and the grief wallowed in while it is there, before moving on.
Life with a child with additional needs of any kind is different. As pre-parents we all have expectations of, and for, our yet-to-be-born bundle. While career paths may not be locked in nor a residential address for when they are 30 decided on, a little picture of what life will be like develops. As so aptly painted in Welcome to Holland, landing in a completely unexpected place is unsettling to say the least. But it is so gorgeous here. There is no way I would have anticipated even being comfortable in this previously unfamiliar neighbourhood. Days sitting by a humidicrib surrounded by worry and beeping machines were spent wondering what now.
Now, there is this kid that swells hearts. She makes people pause and examine their own lives. She gives perspective to all those willing to see it. She works hard…creates joy…finds a way…is true to herself. This is happiness. This is success. I now know what our life is and it’s (on balance) terrific. There are scary times and we have had a few of those over the last couple of years. There is hard slog. There is the recent realisation that I have been changing nappies for nearly 20 years! All of that is there and true. But this girl, who many still see for what she can’t do, reminds me what to focus on. And then I forget and get cranky and frustrated. So she reminds me again. Sometimes gently.
The very best adventures can happen when travel plans come undone. Maybe that’s the point. To plan and have goals for your life but be able to embrace the wrong turns and enjoy the view. I know I am skirting very close to that old pearl “life is a journey” (insert dramatic music)…but I won’t say it, I promise. For me, with hindsight and experience, I know it wasn’t a wrong turn at all but always the way I was supposed to travel. Because there is nothing “wrong” with our girl. She is who she is and K herself knows that better than any of us. Early on in her life, she happily took the gentle rides through Disneyland all the while preparing herself for the excitement she knew would come when she made it to Disney World. There was never a doubt for her. She will do what she wants to do however she can. And I will be here cheering her on and admiring the tulips as we travel.
There is something about taking a moment to be still. To meditate with a coffee (it’s a thing…or maybe I’ll make it a thing!). The warmth of the cup in my hands; the sweet caffeine feeding my addiction; taking time to sit and savour it. Usually it would be an opportunity to relax except I did all of this so my head didn’t explode with a stress induced eruption of frustration and bile.
The disability sector is full of great people…humans living their best lives. Unfortunately, we work within a system that often sucks. (Not eloquent I know but…). Last Thursday had the potential to be wonderful, as every day does. But it wasn’t. Bureaucratic bull won and my girl lost. Not forever…oh no. The fight will continue. It will. But I am weary. The battle is long, constant and draining. The adversary is steadfast and tied to their own rules. Did I mention that I am weary?
The next morning I picked up my weapons prepared to battle again. Instead I paused to called the one person who crossed no mans land for us and thank her. I also voiced frustration at the processes that fell apart and the person I believe dropped the ball. She listened. She agreed it was unacceptable. She worked hard to find a suitable solution. She is not the enemy but an empathetic human working within constraints set by people way above ground level. She still has faith in the scheme she is implementing so I shall try to as well.
I took a couple of days to regroup. The battle plan needed review to head into the next week fully armed but hoping for peace. It seems absurd that an war analogy is so fitting. In an ideal world we would hope our children could access the necessities of life even if we, as parents, were unable to provide them at times. This utopia would see us all looking after each other. Human dignity would be held in high esteem. Our girl has brought many fine people into our lives who aspire to all that is just and good. People who have blessed us with their friendship and generosity. So the battle continues but with the realisation that even the system is not the enemy. It is put in place to aim for fairness and hope for equality. It may not be perfect and the stress of working within in is certainly taking it’s toll but we live in a place of hope.
April is HIE awareness month. It also holds the anniversary of my first encounter with this thing I could barely pronounce much less understand. Hypoxic Ischemic Encephalopathy. It took a while to learn to spell it and understand it. And even longer to embrace it.
HIE robbed me of the relaxed early parenting experience I surely deserved for number two child. It threw us into a whirlwind of hospitals and appointments, tube feeds and medication. There were so many questions about our girls future, and ours, and very few answers. “She might…. She probably won’t…” My girls’ brain injury was severe, so her prognosis wasn’t flash. But as much as the medical-ese wasn’t measurable, neither was her spirit. Once she began to escape the swelling of her brain her light started to shine. Even so, it was difficult to picture a future for her which was independent of me.
The awareness catch phrase is “Hope for HIE”. It is difficult to reconcile those two terms at times but last week I could. Hope is having a glimpse into the future and it looks bloody fantastic. I used to be scared to look ahead. So scared. Life was doable if I stayed in the moment. HIE has such varied outcomes for kids that the picture of an older child wasn’t necessarily where my child was heading so the unknown possibilities were terrifying. Then a young bloke and his dad lifted my hope to that ethereal place somewhere in the rafters.
I shall refrain from using the “I” word for they are ordinary people like you and I and often the idea of being “an inspiration” weighs heavily. The promise I gained from them was wrapped in their ordinariness. They live life with all of it’s joys and disappointments and the many road blocks along the way. But they kept looking for ways to fulfilment…and still do. The dad is bravely listening to his (big) kid and letting him take the lead. This young man has some mad switching skills along with incredible know how and fierce determination…and a wicked sense of humour. He has made his own career with his dad (and the rest of his family) cheering him along. The key to this young man’s light shining through? Assistive technology.
Obstacles tend to fall in your path if you need wheels to get around…sometimes literally. When you speaking voice is unclear that multiplies enormously. The assumption that having no voice means you have nothing to say, is unfortunately still common. An eye gaze communication device is helping dispel that myth for my girl. Switch access options to things like household appliances and computers are taking that a whole lot further and give more choice and control than ever before. This young bloke and his dad reminded me that good, ordinary people are taking steps forward for us all. And aren’t they fabulous people to walk this path alongside…even from a distance.
The days of people like my child being locked in an institution are in the past (mostly). The time of people assuming she should have no choice in her education and only be suited to a “special” or being kept at home are waning. The day when she can work and play in any setting she chooses with the assumption she is more than competent to do so is coming…I hope. The technology to help her achieve that is here and improving all of the time. I place my hope in my kid. She will be the one to know what she wants and have the grit to get it. I remember what she said about Stephen Hawking in an assignment last year…..”he clever because his disability. It make him think differently.” When I see her life as a straight line with speed humps she will see the wiggles she needs to get around those suckers. Hope is her.
Funding. There, I said it. The very word can invoke nervous laughter from funding applications past. The NDIS promises a better system but the transition over to it is proving to be a quite a process. Change isn’t easy. But it’s ok, I have a solution. Santa.
Think about it. He has plenty of workers with centuries of experience, He has a fail proof delivery system that always…yes always…delivers on time. There may have to be some adjustments to the only-once-a-year thing but it’s doable. And, possibly the best bit, there would be hardly any paperwork. Simply one letter of wishes politely written with a promise to eat your veggies and tidy your room.
No more would we have to think of five year goals for our severely disabled two year old just to get a wheelchair. No longer shall we impart all but our knicker size with not so much as a coffee date first. No more forms! A carrot might be a nice incentive though…plus some cookies and milk. And painting the darkest picture of your child on their worst day to be deserving? No way. He’s a jolly old fellow. A “Santa please stop here” sign should do the trick. There would be no more wondering how long your teenager can fit in a wheelchair she’s had for four years…Santa would give a delivery date and stick to it. Oh the possibilities. New AFOs with little sleigh bells. A walker lit up with Rudolph style nose. A shower chair as soft as Santa’s hat.
So we’d better watch out, we won’t have to cry, Santa Claus is coming right now! What are you wishing for??